As people with HIV live longer, aging presents challenges

Antonio Perez, Chicago Tribune

Greg Sanchez, who has been living with HIV for 30 years, holds some of his many medications June 3, 2015, at his Chicago home. Only one pill is for HIV; the rest are for conditions brought on by aging with the virus and years of taking medications to treat it, he says.

Greg Sanchez, who has been living with HIV for 30 years, holds some of his many medications June 3, 2015, at his Chicago home. Only one pill is for HIV; the rest are for conditions brought on by aging with the virus and years of taking medications to treat it, he says. (Antonio Perez, Chicago Tribune)

As long-term HIV survivors live longer, they offer glimpse of what it's like to grow old with the virus

It's been 30 years since Greg Sanchez was diagnosed with HIV, the human immunodeficiency virus that causes AIDS, and he keeps his more than two dozen bottles of pills and other medications on his wooden nightstand so he can get to them easily.

But he takes only a single pill for HIV. The rest of his prescriptions, a crowd of white-topped orange plastic bottles, are to treat the many ailments and conditions that he says are a result of aging with the virus, along with years of taking the sometimes toxic medications to treat it.

At 50, Sanchez has coronary artery disease, fibromyalgia and arthritis, among other illnesses. He suffers chronic pain in his knees and back and walks with a cane because of vertigo and neuropathy. Advancing bone disease has left him in need of hip surgery.

"I'm grateful to still be alive, but my body is probably about 20 years older than I actually am," said Sanchez, who lives in an apartment in Rogers Park filled with plants and photographs of loved ones. "I'm going to the doctors constantly. Sometimes it's hard to put my finger on if it is the HIV, or if it's just getting older.

"Sometimes I feel like an old man."

In the decades since HIV emerged, it has evolved from a diagnosis with an almost certain death sentence to a chronic illness, one that medical advances have made manageable and less urgent. Now, those diagnosed while relatively young have lived into middle age and even longer with the disease. In some cases, they have lived with HIV for more than a quarter-century.

As these long-term survivors get older, though, some are finding their bodies wearing out, their internal organs battered by potent and sometimes toxic medications, the devastatingly permanent conditions that come with aging leaving their mark a lot faster.

Statistics suggest that more and more HIV and AIDS patients will experience aging that way, and that the urgency over the disease's killing prowess will give way to how it slowly takes a different toll on its patients. According to the Centers for Disease Control and Prevention, 26 percent of the estimated 1.2 million people living with HIV in 2011 were 55 or older. In 2013, 27 percent of the estimated 26,688 new AIDS diagnoses were in people 50 and older.

Those demographic changes are forcing a new conversation among health care professionals about how patients manage HIV and the other illnesses that come with growing older. Indeed, this is the first group to live so long with the virus, offering a first glimpse of what it is like to grow old with the disease, as well as a first test for doctors for how to treat it.

Some in that group are men like Sanchez, who was diagnosed in 1985, when the condition was far more deadly. The rest may have contracted the disease later in life. Either way, the inflammation HIV causes makes the body work harder and show symptoms of aging faster.

Antonio Perez, Chicago Tribune

Roy Ferguson, 63, who has lived with HIV for 18 years, pauses during a walk June 11, 2015, in his Brookfield neighborhood. Ferguson, an activist who works for better access to medication and research for people with HIV, sticks to a disciplined two-hour workout regimen and a careful diet.

Roy Ferguson, 63, who has lived with HIV for 18 years, pauses during a walk June 11, 2015, in his Brookfield neighborhood. Ferguson, an activist who works for better access to medication and research for people with HIV, sticks to a disciplined two-hour workout regimen and a careful diet. (Antonio Perez, Chicago Tribune)

Few studies have examined age-related health problems among HIV patients and how to slow what looks like an accelerated aging process. One study at the University of California at Los Angeles, suggests that HIV-positive blood samples showed signs of aging 14 years faster than the blood of healthy individuals. But researchers examining those samples still have more work to do to determine why, said Tammy Rickabaugh, an assistant researcher with the project at the school's AIDS Institute and Center for AIDS Research.

"We definitely see from studies that HIV-infected people tend to have clinical conditions earlier: frailty, diabetes, high blood pressure," she said. "What's difficult to tease out is how much of that is because of the virus and how much of that is from drug treatment. We know the drugs have some effects."

At the Howard Brown Health Center, on Chicago's North Side, doctors and other health care providers have begun counseling young HIV patients on heart disease, diabetes, kidney and liver disease and cancers and are testing them for those conditions earlier. They advise them that if they overcome HIV, other issues are likely to arise, said Dr. Magda Houlberg, a chief clinical officer, internal medicine physician and geriatric expert at Howard Brown.

"Some patients are exhausted because they have experienced chronic illness for so long and now they are growing old," Houlberg said. "They think, 'Wow, this doesn't go away. I have all these other new things and I can only expect more things to come.'"

Roy Ferguson, 63, has lived with HIV for 18 years.

Three times, he was near death with pneumonia. In 2011, he went to the Hines VA Hospital thinking he would die, he said. Instead, he made it through the crisis.

"Then it became clear that I was going to live, not die," he said. "I thought, 'Now what do I do with myself?' "

Ferguson worked for years as a field service technician installing equipment until he was downsized. He has emerged as an activist pushing for better access to medication and research for people infected with HIV. These days, he sticks with a disciplined two-hour workout regimen of pushups, squats and bench presses and can be obsessive about his diet. To keep an upbeat disposition, he works with HIV-positive military veterans and volunteers with the AIDS Foundation of Chicago.

Unlike Sanchez, he takes only five pills a day, three of them to manage HIV.

"It helps to think of the benefits of aging, instead of giving in to fear," he said. "Now I'm prepared to live."

It's not just the physical problems that make aging with HIV a challenge. There is also a psychological toll: the guilt from having survived when so many others died. There is a fatigue, too, that can set in from dealing with so many ailments and taking so much medication.

Then there are those who didn't financially prepare because they didn't expect to live long enough to retire. Others find themselves debt-ridden from medical bills.

Even as an educator on HIV and aging who talks about the issue often, Brian Bongner said it's different living through it. He was diagnosed in 1987, took medications that possibly damaged his organs and watched dozens of his friends succumb to AIDS-related illnesses.

"I was told three different times by doctors that I would not go home from the hospital," he said. "I was told I would never see 23."

Now, at 47, he finds purpose in teaching about the condition.

"You feel isolated," Bongner said at a recent training session, speaking to leaders from agencies that work with HIV-positive clients. "You don't want your friends to see you sick. You don't want to go to the doctor and be told you're dying from something else. Your organs are already damaged by HIV, then there's the medication to treat it, then there's the aging. At one point we didn't have an aging HIV-positive population. Now we have 85-year-olds coming through the door."

Sanchez tries to strategize to overcome his limitations. He has a home health aide who helps him with cooking and other basic tasks. He records reminders of things he has to do and sets his phone alarm so he won't forget when to take his medications.

"I try to take the bulk of my meds at night so I'm better during the day," he said. "I have to gauge my energy level."

Sanchez was only 19 when he learned he was HIV positive. The first thing he did was cash out his life insurance policy, thinking it would never mature. It took him seven years and nearly dying to come to terms with it and begin taking medication.

But while he pushes to rehabilitate, he lives from one health crisis to another. Some weeks, he is at the doctor's office two to three times. He keeps handy a neat, typewritten list of all his ailments and medications so he can let doctors know what he's taking.

He often reads about men his age who also have HIV but who are more robust and active.

But that's not his life.

He misses out on music festivals because he can't stand for long periods of time. Going to dinner is arduous because of his diet restrictions. Alcohol doesn't mix well with his medications. His aches and pains make being social tough.

He spends a lot of time alone.

"They show pictures of men climbing mountains, running marathons and conquering the world," he said of some of the magazines he reads. "I feel I'm not represented. Our community wants us to be a certain way, and when we're not, we are isolated."